Saturday, August 15, 2009

So What's the Truth in Health Care Reform?

I know many of you are following this health care reform battle daily and trying to figure out what would be the best for you and your family. For Sound-off Saturday I've decided to provide 3 points of view (Click on titles to link to original article) that I've read over the last week and see if any of you out there have any insight onto what's actually going on with this whole mess. The first article is President Obama's bullet points on what reform will do. The second is from a House Republican Leader on what the reform will actually do. The third article is debunking the myths that the GOP is putting out there about health care reform.

I know one thing for sure: when it comes to politics, it's very hard to separate the truth from lies. So guys, tell me what you think!

Why we need reform:

Over 46 million Americans have no medical coverage at all; millions more are under-insured or fear losing coverage. If we continue on our current path health care costs will continue to soar and within the next decade one out of every five dollars will be spent on health care.

This is unacceptable, the system is broken and we cannot postpone meaningful reform any longer.

What's in it for you:

Your choice of doctors and plans will be protected; those that are happy with their current coverage can keep it or choose a new plan--including a public option.

Additionally, everyone will benefit from eight protections that will ensure stability and security for families across the country:

1. Coverage Regardless of Pre-Existing Conditions

Insurance companies will be prohibited from refusing coverage because of medical history.

2. An End to Exorbitant Out-of-Pocket Expenses, Deductible and Co-Pays

Insurance companies will have to abide by yearly caps on how much they can charge for out-of-pocket expenses.

3. Full Coverage for Preventive Care

Insurance companies must fully cover--without charge--regular checkups and tests that help prevent illness, including mammograms or eye and foot exams for diabetics.

4. No Dropped Coverage for the Seriously Ill

Insurance companies will be prohibited from dropping or lessening coverage for people who become seriously ill.

5. No Gender Discrimination

Insurance companies will be prohibited from charging people more because of their gender.

6. No Annual or Lifetime Caps on Coverage

Insurance companies will be prevented from placing annual or lifetime caps on the coverage people receive.

7. Extended Coverage for Young Adults

Children will be eligible for family coverage through the age of 26.

8. Guaranteed Insurance Renewal

Insurance companies will be required to renew a policy as long as the policyholder pays their premium in full. Insurance companies won't be allowed to refuse renewal if someone becomes sick.

"This isn't about politics. This is about people's lives.
This is about people's businesses. This is about our future."

-President Barack Obama

Friday, August 14, 2009

The First Time I Died -Part 1

I was a high school senior. It was the first football game of the year. I was fortunate to be my team’s starting tailback. After a pretty good half (65 yards rushing and two sacks as a DE), my muscles started cramping up. I always had problems with cramping while playing sports. Staying hydrated was always a major focus of mine. There were two times before this incident when the cramps got the best of me. Once, the summer after 8th grade, I was rushed to the hospital by ambulance because of severe muscle cramps and the inability to hold down any liquid (I was outside working on a house renovation in the heat of summer without any water. I know. How brilliant of me.) And also when I was visiting my father over one summer in San Antonio, I started severely cramping after a game of flag football. I was rushed by ambulance again to the hospital and luckily my dad (a military hospital administrator) was able to get his friend (a doctor) to meet me at the hospital doors and begin treating me right away. After blood and urine tests (in which my urine looked like Root Beer) the doctor said that he felt I was just minutes away from some of my organs shutting down. Both times was quite a shock to the system and even more of a shock to my parents.

Well, back to my senior year. This episode of cramps was like nothing I had ever felt before. We’re talking here about muscles cramping in areas that I had no idea contained muscles. They started during the game, but I was able to stretch them out. By the time half time hit, they were all over my body. There I was on the sideline, lying on the ground with trainers surrounding me trying to stretch what seemed like every part of my body. We soon realized that they were not going to stop. So now the question was, do we call an ambulance or do we just go to the ER? We decided to just go to the ER. Bad decision. My uncle carried me to the awaiting minivan and off we went. The whole time to the hospital he was rubbing and stretching all of my leg muscles. To try and describe the pain would do the pain an injustice. All I can say is, picture a “Charlie horse”. Now picture a bunch of Charlie horses all over your body. When I (or my uncle) would try to get rid of a cramp in my quad, it would move to my hamstring. Work on my cramping bicep and it would move to by tricep. I’m telling you, every muscle in my body was cramping in differing strengths for different lengths of time. There was a time during this episode that my eyelids cramped open. I couldn’t close my eyes. Never knew that could happen.

We arrived to the ER and my uncle ran in and got a gurney and a staff member. This is when we realized it was a mistake to not call an ambulance. In a move I can still not explain, they determined that I was not an emergency. There I was sitting, or more accurately laying, in the emergency room with every muscle in my body cramping. My mom and my uncle were diligently rubbing the various parts of my body that were affected as I was writhing in pain. We told everybody working there the situation. I had Cystic Fibrosis and this had happened twice before but not as bad. I pleaded with them to please just get me started on IV fluids. At one point, I banged on the glass partition and said, “You really don’t get it, I need help right now!” I felt helpless. Over the years I have learned to gage when I’m really in trouble and when it was something I could work through. I knew I was in trouble. I needed to be seen and I needed to be seen right away. Nothing seemed to get their attention.

That all changed when I started to hyperventilate and get tunnel vision. I had always heard about tunnel vision but I had never experienced it. I remember trying to catch my breath and just not being able to. I was looking at the ceiling and a dark circle seemed to be closing in around me. It got to the point that I could only see probably a foot or two of the ceiling. It was if I was looking through a scope. With this new development, they rushed me to the back.

When I got into the room, I was pretty much out of it. I don’t remember much in between the tunnel vision and actually getting back into the room. When I got back to the room, I do remember feeling a sense of relief. Finally I was going to get “better”. Boy was I wrong. It only got worse. They had started an IV on me and there were more and more people coming into my room. I remember looking to my mom and she was such a calming force. I thought to myself that something must be going on because there are now a lot of people around. I could not catch my breath and I started to panic. The last thing I remember was taking a ton of short and shallow breaths one after the other and a doctor saying, “Ron, you need to calm down and try to take deep breaths”. When she said this, the medical staff was in the process of sitting me up. That’s when it happened. I had respiratory arrest. My eyes rolled into the back of my head, I stopped breathing.

To be continued....

Part 2 coming next Friday

Miss the first "First Friday"? Click here to check it out.

Thursday, August 13, 2009

I Know My Enemy...

I have so many things to be thankful for, but here are a few that are on my mind:

- I'm so thankful that I know my enemy. I know what I'm up against and better yet, I know what I can do to help me in my fight. There are so many diseases that strike suddenly and harshly with out any warning. I've been blessed to know my enemy since I was six months old and have been given a battle plan from day one. I know no different than to be in a fight every day of my life. I'm battle tested. Nothing that my enemy does surprises me and so far I've been able to fight back with everything I have. Over the last couple of years, I've been given more weapons then ever before and it's up to me to use them. For the first time in my life, I can actually see this war being won- and not by Cystic Fibrosis, by me.

- I'm so thankful for Twitter. That sounds funny when I actually type it out, but seriously, it's been such a blessing. I have met so many wonderful CFers and CF families that I can't even begin to keep a count. It's a great way to keep up on CF news, CF events and what's going on in the CF world in general. Setting up an account is very easy and you can be active on the site as little or as much as you want. If you need help setting up an account or have more questions, please, contact me. If you're on Twitter, you can find me at @RunSickboyRun. I'll give you some other great Cystic Fibrosis related tweeple to follow if you want to contact me through Twitter.

- I'm so thankful for people that have no affinity with Cystic Fibrosis that still pour their heart and soul into raising awareness and money for the CFF. I seem to be running into these people more and more and I am humbled and thankful every time that I do. Who knows who will be next to hop aboard the CF awareness train? Could that person be the next to raise millions of dollars? We never know, which is why I treat everybody I talk to about CF like they're the key to curing Cystic Fibrosis. Like I've said before, we may be just one person away from making a HUGE difference. Maybe you're the CFer or family who will bring in the next person who changes the game?

It all starts with sharing your story.

Wednesday, August 12, 2009

Running is very hard...

To compare this with last week click here

...and that's exactly why I chose that form of exercise over others. I realize that I could bike, or run inside, or swim, or take spinning classes or a myriad of other things, but I choose to run because it is such a challenge. The last time I ran a mile straight (outside) was in 1996. It was for a fitness test that was administered by our football coach. I ended up running the mile in 6m 14s but vividly remember collapsing on a mat that was set over a long jump pit. I was always good (and fast) at running short distances but would avoid running long distances like the plague.

Over the years, I have literally NEVER ran outside; I would always run on a treadmill. Running on a treadmill is so much easier for me and although I never ran consistently, I was able to do between 2 and 3 miles when I would commit to running for distance. But I didn't like it, it hurt not only my lungs, but my feet, ankles, knees, hips; if it was below my waist, it was in pain. Here's the deal though: It hurts for everybody. I think that many of us in the CF community (myself included) always think we can't run long distances because of Cystic Fibrosis. But I learned something very quickly when I started talking to other runners: I wasn't alone in my pain.

When I recommitted myself to this new fitness routine I wanted to challenge myself like never before. To do that, I knew that I would have to run. There was some problems though; I didn't like running. I found it boring. I found it painful. I struggled to run 30 seconds. I don't like doing stuff I'm not good at. I figured it was to late to become "a runner". I had joint problems already. It's hot in Arizona. My mouth get dry when I run. It's hard to breathe when I run. The list goes on and on and on. Now look back at that list- see anything there that is caused by CF? Neither do I. See when you run, CF or not, it's supposed to hurt. It's going to be hard to breathe. It may be boring. I have yet to talk to a runner that doesn't have breathing problems when they run. Sure, it may come easier to them, they may be able to catch their breath faster than I can, but I'm not trying to be them. I'm not trying to break any distance records. I'm not trying to be the best runner in the world. I'm just trying to be the best runner in MY world. When I run with Mandi, I'm never trying to be better than her, I'm only trying to be better than me. Unless you can find a carbon copy of yourself, there's no point in trying to compare times or the ease at which you run. All that matters is how YOU feel and what running (or exercise) can do for YOU.

Just remember, it's going to hurt. It may not be fun. It WILL be hard to breathe. But it will help with your lung function and your overall health. Isn't that what we all want???

Last weeks results:
Thursday: Walk 5 minutes, Run 2 minutes (4 cycles)
Saturday: Walk 5 minutes, Run 2 minutes (4 cycles)
Tuesday: Walk 3 minutes, Run 4 minutes (4 cycles)

Note: Tuesday's run was way easier than I thought it would be...on the first half of the run...which was downhill. I made it though and coughed up a TON of mucus along the way. I still don't see how I'm going to make it through this new running program, but I know I'll die trying...wait, maybe not die, but Mandi will have to pick me up off the ground :)

Another note: I was so happy after making the run that Mandi and I decided to celebrate....

...maybe it wasn't the best decision, but man did it ever taste so good!

Tuesday, August 11, 2009

My Top Ten Favorite Movies

This may not be a comprehensive list truly reflecting my top ten favorite movies, but I don't think by fretting over this any longer the task would be any easier. I started by jotting down movies that came to mind as a "favorite" and then paring that list down to a top ten. The movie links will take you to a movie review site that I use to help decide what movies to go and see (I also use which rates them based on sex, violence and language). The site is called and they rate movies by a percentage (50% would reflect half of the reviewers giving it "two thumbs up"). It's interesting to see what kind of reviews the movies on my top ten list received. I encourage you to check out how your favorite movies were rated. You may be surprised.

10. Wedding Crashers -I've seen this movie about 20 times and is one of two movies on my ipod. *(L CH)
9. Shawshank Redemption -An absolute classic that I think ANYBODY would enjoy. Great story with an intriguing beginning, middle and end. (L)
8. Scarface -As a man, maybe I just feel pressure to like this movie. Seriously though, AL Pacino at his best. (L CH V)
7. Dumb and Dumber -I don't see how any human being doesn't find this movie hysterical. Come on, who doesn't want to see the snow ball to the face scene over and over again. (CH)
6. Goonies -I've probably seen this movie more times than any other. I watched it ALL OF THE TIME as a kid. I wanted to be a Goonie...I turned out just being a Goober.
5. Gladiator (1992) -Not too many people have seen this movie. It's about a kid from the streets trying to make ends meat for his family by doing some underground boxing. Cheesy at parts, but I love the movie anyway! (L V)
4. Old School -This movie is Will Ferrel at his best. This is the other movie that I have on my ipod. (L CH)
3. Gladiator (2000) -If you haven't seen this movie, go rent it right now. Violent in parts, but it will keep you on the edge of your seat and entertained throughout. (L V)
2. American History X -Another movie that a lot of people haven't seen. I think this is the best role that Edward Norton ever had (Primal Fear a close second) and the subject matter in this flick is truly remarkable. (L V)
1. Braveheart (V) -"Every man dies, but not every man truly lives": That quote sums up the movie as well as my CF Life.

My top three is pretty interchangeable. I could watch those three movies every day of the week at anytime. In my opinion, they are all true classics.


Monday, August 10, 2009

Mandi Monday should be renamed Mandi's Meltdowns

So in the act of full disclosure, I'll tell you that I actually wrote this last Tuesday. But I did it with your best interest at heart. I had a bit of a meltdown, unexpectedly (and to Ronnie's misfortune) last Tuesday, and figured I'd write about it right away to capture the raw emotion better...for your reading pleasure.

I had a bit of a meltdown today. Why, you ask? I have no clue. Ronnie and I were sitting having our breakfast and BOOM, meltdown about health insurance. How did it come up and where did my emotions and fear come from? I have no idea. Ronnie and I both can't remember the first words out of my mouth, maybe I blacked out as I hyperventilated through my sobs? Within a short span of time I said we'd never get married if we didn't start working on insurance now, tried to find career options for both Ronnie and myself, said I felt like it was all my responsibility, wished I had a job that gave him benefits, and the list of grievances goes on. Where did that get us? No where - as Ronnie continuously pointed out during the conversation as he lovingly tried to say, "why are you worrying about this right at this moment. Nothing will change at this second by you worrying and getting worked up" to which I would tearfully respond, "one of us has to worry about it or nothing will ever change" (not so logical).

Let me give you a slight background. I have medical benefits with my job, but I'm at a SUPER tiny company, so there's no way my plan can support him on it. Ronnie works for the same non-profit part time, but if he gets benefits through it, the company's premiums go up 10 fold. He's currently still under his mom's insurance, so if we get married, he is no longer considered a "dependent" on his mom, so no insurance. Which leads me to the kicker, we can only tie the knot once I have a job that has good enough benefits for him. It has been discussed that Ronnie work (part of my melt down was that it all depended on me, and I wanted him to try also). We'll explore that option, but it's obviously a little riskier because he needs to make sure he can keep up on his treatments, working out and hospitalizations while working.

So here leads to the bigger issue that I was upset about (I's tough to quite tell). I feel a little embarrassed to actually express this, but I think it may help both CFers and CF significant others, so here it goes. I felt, in that moment, like I was having to sacrifice a lot. I felt like I had to leave a job I love to get him benefits. I felt like I had to work forever to keep those benefits, while I had always dreamed of being a stay-at-home mom (like my mom was). I then thought, "well we may not even be able to have kids" (something I've always wanted). I felt like we couldn't get married when we wanted (we've been ready for awhile now). I felt like we didn't have all the time in the world (I clearly never pictured marrying someone I knew could potentially just not wake up tomorrow). I felt like I was having to give up a lot of what I've always wanted to be with Ronnie because he had CF as all those unenvisioned circumstances piled up in my mind, I got more and more worked up.

But here is what I often think about, when I return to a rational state. There are two main things:

1. I may be giving a lot when it comes to Ronnie's CF life, but I am not giving up anything when it comes to Ronnie. Ronnie is just what I need. I cannot begin to tell you what he does for me. All we talk about on here, is what I do for Ronnie and his CF because that's what this blog is about, but that's only a small portion of our relationship and certainly only 1 side of it. Ronnie is my rock. He provides guidance, confidence, understanding, excitement, support, encouragement, comfort, joy, and countless other things in my life. At the end of a tough day, one conversation with him is all I need to put the day back into perspective and make me forget the stress of anything that may have come my/our way. His sense of humor has a way of cracking me up until I've got tears running down my face and I snort (yes, snort). Also, I'm very much a rollercoaster of excitement, anxiousness, sadness, happiness, goofiness, intensity, animation, etc etc, while Ron is a consistent, steady-eddy. That's just what I need (and certainly what my future family will need). He is very much like my dad. And I can tell you that there is no better father and husband than my dad and I'd be bless to marry a man just like him (not to mention I've learned how to interact with my dad for the last 22 years, so it comes naturally). So while Ronnie's CF presents a different set of circumstances that I maybe never pictured, Ronnie is the man I always wanted and never knew I needed. And he is very much the way he is because of his CF, so I would NEVER take that away. I'd rather have the challenges of CF then the man Ronnie would be without it.

2. I may have always pictured my life one way, but that doesn't mean God planned it that way. I pictured what I've always known. A dad/husband that worked, a mom/wife that stayed home, a few kids that came with ease - as fortunate accidents, a guaranteed long life with my spouse. That is what I envisioned as a perfect, beautiful life. But what isn't beautiful about this?: A stay at home dad/husband (that is FAR more patient, just as loving, and just as good of a role model), a mom/wife that works, a few kids that are miracles, and a blessed marriage that is full of love, happiness and memories. So sometimes I need to push aside my preconceived ideas of what I wanted my life to look like and let God show me what my life is supposed to look like.

I'm not sure if these are natural feelings that come along with a CF relationship. I would imagine that they are. I'd love to hear your thoughts if you've had similar ones, or if you never have, I'd love to hear that too. I think all to often we think it's not "appropriate" to share some of the negative thoughts or fears we have. But they are quite normal and therefore healthy to discuss. I think we're often scared to verbalize things like this with our CFers because we don't want to hurt their feelings or assume that it will be insulting, but if done tactfully, it can really strengthen a relationship. They have had their whole lives to figure out their perception of their life with CF, for most of us, we are new to figuring out ours. However, I will say, my approach, expressing all of this in a moment of fear, anxiousness and sadness, maybe isn't the best. I would guess that you can probably more tactful in your approach if conversations like this are had in rational, calm conversations, but sometimes, it's just not how it happens.

So bigger lesson of the day: Share your feelings, both good and bad, about CF with your CFer. There's nothing wrong with the way you feel about it and by talking about it, it becomes you and your CFer against CF, not you against you CFer, which could happen if you bottle it up.